Today, on Rare Disease Day, we come together not just as individuals but as a global force for change. With over 300 million people worldwide affected by rare diseases, our collective voices matter. That’s why we are launching our “United for Rare, Driven for SPS” campaign—an opportunity to raise awareness, inspire hope, and take action.
Whether it’s advocating for vital research funding, joining us at the upcoming SPS Symposium, or celebrating the incredible resilience within our community, we invite you to stand with us. Every step forward brings us closer to better treatments, a deeper understanding, and, ultimately, a cure. Let's make this moment count!
Here's what you need to know this month:
Today, on Rare Disease Day, we're proud to launch our "United for Rare, Driven for SPS" campaign, which will culminate on International SPS Day on March 15.
Rare diseases affect over 300 million people worldwide, and while our conditions may differ, our experiences are strikingly similar—highlighting the importance of unity. This campaign is about awareness, hope, and action.
We invite you to donate today and become part of the movement for change.
JOIN US - UNITED FOR RARE, DRIVEN FOR SPS!
MAKE A DONATION TODAY!
We're thrilled to announce that the 2025 SPS Symposium will take place July 19-20 in Windsor Locks, CT & Online!
Registration Opens May 1 at stiffperson.org/2025symposium
Venue: Online & In-Person (Sheraton Hartford Hotel at Bradley Airport)
Location: 1 Bradley International Airport, Windsor Locks, CT
Discounted Hotel Rates Available: Make A Reservation Here
Guest presenters include Marinos Dalakas, M.D., Abbey Hughes, PhD, Duarte Machado, M.D., Andrew McKeon, M.B., B.Ch., M.D., Scott Newsome, DO, MSCS, FAAN, FANA, and Amanda L. Piquet, MD, FAAN.
The agenda will be released in the coming weeks, featuring leading researchers, clinicians, and patient advocates.Stay tuned for more, and make your reservation today!
Kyverna Therapeutics has launched the KYSA-8 clinical trial to evaluate KYV-101, a CAR T-cell therapy designed for people with SPS who have not responded to current treatments. This Phase 2 trial aims to determine the safety and effectiveness of KYV-101, marking a significant milestone in SPS research.Clinical trials are research studies conducted to evaluate medical treatments like KYV-101. They ensure therapies are safe and effective before becoming widely available. These trials are vital in advancing care and bringing hope to patients with rare diseases like SPS.For details about the KYSA-8 trial and participation, check out the flyer below and visit stiffpersonsyndrometrials.com.
Questions? Email Kyverna at: ClinicalTrialsInfo@kyvernatx.com
PLEASE NOTE: Any information related to clinical trials are for informational and educational purposes only, and to raise awareness of such trials to the SPSRF community. The above content is not an endorsement of any specific clinical trial and/or company or institution conducting said trial. Talk with your healthcare provider to determine if any particular clinical trial is right for you or a loved one.
Many of you have seen our urgent Call to Action regarding proposed budget cuts to rare disease research and Medicaid programs. The House of Representatives has taken steps that could cut hundreds of billions of dollars from Medicaid, limiting vital healthcare access for rare disease patients, including those with SPS.
Medicaid is the largest provider of healthcare coverage, supporting nearly 80 million people. These changes could devastate the rare disease community. We urge you to contact your representatives today and demand action!
Exciting news! The SPS Global Registry is nearing its final review stage. After multiple rounds of testing and revisions, it is now in what we hope is the last phase of adjustments before undergoing final Institutional Review Board (IRB) approval.
We anticipate launching the SPS Global Registry in the next few weeks!
Stay tuned for an official announcement and details on how you can participate in this important research initiative!
With the SPS Global Registry nearing completion, our focus is now shifting towards the SPS Diagnostic Criteria Initiative—a critical step in ensuring earlier detection, proper treatment, and access to research opportunities.
Dr. Scott Newsome has been appointed Chair of the study, with Dr. Amanda Piquet and Dr. Marinos Dalakas, M.D., serving as Co-Chairs.
The next milestone? Selecting a methodologist to help shape this initiative's final scope and structured plan. We aim to develop a standardized framework that will improve patient outcomes worldwide.We know this is vital to both the patient and medical community, and we are committed to ensuring this initiative is scientifically rigorous, collaborative, and impactful.
PLEASE SUPPORT OUR MISSION TO IDENTIFY BETTER TREATMENTS FOR SPS!
JOIN US TODAY!
We're honored to spotlight Andrea Naphegyi, an SPS patient and author from Hungary. She recently released her book, One in a Million, When Mind, Body, and Soul Play as a Team, sharing her journey with SPS. Get the book on Kobo or Bol.com.
Andrea first published the book in Hungarian in August 2024 in her hometown, Cluj-Napoca, Romania. She also gave an interview on public broadcast television, discussing life with a chronic illness and disability.
Watch the interview with English subtitles:YouTube
Every single one of you strengthens The SPSRF community—whether you're spreading awareness, donating, advocating, or sharing your story.
Together, we are driving change for SPS and ensuring a future where better treatments and a cure are within reach.
Thank you for standing with us.
With gratitude,
The Stiff Person Syndrome Research Foundation
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